In April 2015, Justin Sangiuliano, a seventeen-year-old diagnosed with Autism, was physically restrained at his group home in Oshawa, Canada. To control an aggressive outburst, two staff members grabbed his arms and placed him on the floor as he kicked and screamed. Staff released him once he stopped struggling, but Justin never got up. He was rushed to the hospital without a heartbeat and died five days later.

Justin’s death, and the deaths of other children in Ontario group homes, raises questions about the provincial child protection system and the efficacy of using force to restrain vulnerable populations.

The Canadian Institute for Health Information defines physical restraint as when “a person is physically held to restrict his or her movement for a brief period of time in order to restore calm to the individual.”

Ontario regulations state that physical restraints can be used to prevent group home residents from injuring themselves, injuring others, or causing significant property damage. Restraints should only be used after less intrusive methods have been applied and deemed ineffective.

But a Toronto Star investigation found that physical intervention is being used as a frequent form of discipline in these homes. The report documented that, between 2010 and 2015, some 45,000 restraints were used in Ontario residential programs to discipline vulnerable children and youth. Restraints were used in more than one third of the 1,200 serious occurrence reports filed in 2013 by group homes in Toronto.

While there may be some benefits to using physical restraint in controlling violent children, inappropriate use of these practices suggests a power and control issue among some group home staff.

The Toronto Star investigation reported an instance of a child begging to be released: “I’m going to pee myself.” The staff members refused to let go of the child until he urinated on himself.

In another study by social work professors Laura Steckley and Andrew Kendrick at the University of Strathclyde in Glasgow, Scotland, children spoke to the injuries they incurred as a result of forcible restraint:

“Half the time when residential staff restrain you they just purely hurt you. I get hurt most of the time. I had a mark from a carpet burn, hurting on my shoulder, and marks on my chest.”

Additionally, preventable deaths and high rates of physical intervention on children with developmental disabilities demonstrate inadequate training of residential staff.

In an interview with the Toronto Star, Kim Snow, an associate professor at Ryerson University’s School of Child and Youth Care, speaks to the dangers of restraining children with developmental disabilities without safe and adequate staff training:

“Although the provincial government lists six approved training programs in the use of physical restraints, no one has looked at which techniques are best. Is one safer than the other? Should one be used in certain situations and not others? Sometimes staff can’t contain kids using a restraint. So what happens when those situations occur? Until we can answer those questions, the risk of harm as a result of restraints is quite high for both staff and kids.”

As an advocate for child safety within the Ontario residential system for over three decades, Snow wants the province to track the use of restraints more closely.

“It takes highly skilled staff to work with children with histories of trauma and accompanying rage to be able to contain them without physically intervening. When people lack those skills they become frightened and they intervene much too quickly. When that happens, the child or youth’s physical and psychological safety is at risk.”

Research by the Residential Child Care Project at Cornell University addresses the physical and psychological harm that can result from restraint use on a vulnerable population. The 2008 study found restraints to be “a considerable risk to vulnerable youth, are intrusive, have a negative effect on the treatment environment, and have a profound effect on those youth who have experienced trauma in their lives.”

And a 2013 report by Youth Leaving Care, a working group created by the Ontario government to investigate the quality of care vulnerable youth receive in group homes, identified high frequency of restraint use to be a major problem, and recommended the government “works with group home providers to clarify and reinforce policies and best practices to make sure they are followed.”

So, what is being done to improve the care of children with disabilities in Ontario residential homes?

Irwin Elman, the Provincial Advocate for Children and Youth, leads a group called Youth Leaving Care that caters to young people who grew up in Ontario’s group homes.

While certain advocates of children and youth in residential homes call for improved training to properly implement restraints, Elman believes these homes should eliminate restraint altogether to limit preventable deaths.

“These are children who often come with experiences of violence or serious mental health challenges. How in hell do we expect them to achieve to their full potential, to heal, to find supportive relationships in those kinds of environments?”

“Not being able to speak is not the same as not having anything to say,” read the flat and emotionless voice of the computer. The author of these words, Tracy Thresher, is a 42-year-old man living with autism.

“Tracy, good job! I am landing on my bald head some good vibes from you,” added Larry Bissonnette, a 52-year-old autistic man and long-time friend of Tracy.

Since 2000, Tracy and Larry have been traveling the globe on a quest to redefine autism, offering an insider’s perspective on the disorder. Part of their fame comes from being among the first with autism to communicate through typing, at first relying on others to help them control their muscle spasms, but now writing independently.

Their goal is to change public and professional views on the disorder, including preconceptions about disability and intelligence.

During their travels, they stopped at York University in Toronto, Canada, where they presented a screening of their documentary Wretches and Jabberers, followed by a panel discussion. As audience members arrived, Tracy and Larry were already conversing with the event organizers by typing on their iPads.

At first, Tracy comes off as clumsy and quiet, while Larry seems lost in echolalia, the uncontrollable repetition of words commonly associated with autism, their outer appearance revealing none of the thoughtfulness and humour later conveyed in written form.

Larry views the main goal of his self-advocacy to make “intelligence seen as possible, no matter how weird you act or how little your speech is. Autism is not so much an abnormal brain, but abnormal experience. My difficulties are not with thinking and knowing, but with doing and acting.”

They have no oral language skills and engage in odd, uncontrollable rituals. Growing up, both were labelled ‘low-functioning autistics,’ presumed to be mentally retarded. They were excluded from normal schooling and faced the challenges of social isolation in mental institutions and adult disability centers.

Today, we know that including students with special needs in regular classrooms can greatly improve development and quality of life. Yet according to the Canadian Council on Learning, a large number of students with the disorder continue to be excluded from mainstream classrooms.

According to the Autism Society, 500,000 Americans with autism will reach adulthood in the next 10 years, but Tracy and Larry wonder whether we will find a way to embrace these individuals or if we will continue to marginalize them. Larry suggested that, “the problem isn’t autism, the problem is the lack of understanding of autism, lack of resources, interventions not being met with the person in mind, and assumptions being made about the person.”

Performance is often a reflection of the individual in context. Through their advocacy, Tracy and Larry say that sufferers of autism are more disabled by the environments they live in than their own bodies.

Tracy’s accomplishments are a testament to the potential that some with autism possess. He has presented at numerous local and national workshops and conferences, and has consulted to schools. He is also a member of the Vermont Statewide Standing Committee, and has worked for the Green Mountain Self-Advocates.

An artist, some of Larry’s notable achievements include his paintings, which are in the permanent collection at the Musée de l’Art Brut in Switzerland and in many private collections around the world. His work was most recently featured in the Hobart William and Smith Disability and the Arts Festival.

The goal behind their efforts is to encourage people to re-examine misconceptions about autistic people, and to allow educators, professionals, and the public to discover the individuals behind the label. This view aims not to romanticize the struggles of autism, but to promote the idea that if autistic individuals cannot learn within the current educational system, schools need to adapt.

Allowing these individuals to develop their own unique talents will help them thrive.

A social media campaign aimed at raising awareness for one health problem becomes the cruel vehicle by which awareness is raised for another.

On August 18, 2014, a 15-year-old autistic boy in Bay Village, Ohio was encouraged by five teenage friends to participate in what he thought would be the ALS ice bucket challenge. Instead, the teenagers dropped a bucket of urine, feces, and tobacco spit on his head. When the boy’s parents found a video of the prank on his phone, they immediately took it to Fox 8 News to show how children with mental illness can be victimized.

The video went viral and was met with outrage by the general public and heralded as a disgrace to the purpose of the ALS Association’s campaign.

In an interview with Fox 8 news, the boy’s mother identifies herself as Diane to protect her son’s identity:

“The bucket challenge is supposed to be raising awareness for this disease and now they’ve turned it into a sick joke. I just can’t understand why kids would do something this cruel.”

But there is nothing that can’t be used to bring about suffering, especially when the victim is an easy target.

In a study by Benjamin Zablotsky of Johns Hopkins Bloomberg School of Public Health and his colleagues, 1221 parents of children with Autism Spectrum Disorder were asked to enroll in the Interactive Autism Network (IAN) and asked about their child’s history with bullies at school. The results showed that 63% of autistic children experienced victimization by their peers at some point in their lives and that 38% were bullied in the past month. An extreme finding when compared to the average bullying rate of 20-30% reported by students in general.

The study also revealed that autistic children in regular classroom settings with peers who do not have ASD are more likely to be bullied than children who are placed in specialized educational settings.

Catherine Cappadocia, a doctoral student, along with psychologists Jonathan Weiss and Debra Pepler in the faculty of health at York University, has studied the effects of bullying on the development of autistic children. She found that autistic children who have parents with mental health issues are three times as likely to become victims, especially at a young age.

Speech difficulties also serve to increase the risk of being bullied. For autistic children who are unable to express themselves to the offenders or to authorities, victimization can become unavoidable.

A combination of many of these factors may be what led to the victimization of Diane’s son. Yet what makes this issue more disturbing is that the five juveniles responsible claimed to be his friends.

Bay Village’s County Prosecutor, head of the office’s Juvenile Division said: “The victim and the five charged juveniles were and are friends and classmates. They regularly associate with one another and, at times, engage in distasteful and sophomoric pranks. However, this incident is clearly different. It crossed a moral and legal line, and even the five alleged perpetrators understand that and have expressed regret.”

Three of the boys involved in the prank were charged with two counts of delinquency, assault and disorderly conduct. The remaining two perpetrators were charged with a single count of disorderly conduct.

Researchers Vicki Bitsika and Christopher Sharpley have shown that a large number of children with ASD often have few or no friends and spend most of their free time at school alone. Around 40% of these children have also said that the few people they believe to be their friends tend to bully them too.

Bitsika and Sharpley also explain that this harassment can create a positive feedback loop, slowing healthy development and increasing autistic children’s difficulty displaying emotions and communicating with others.

For autistic children to grow up in a healthy environment, schools, parents, and children need to be educated not only about bullying, but about autism itself.

Probiotics can be found in many foods, like yogurt, soups, and even pizza, and are often viewed as a “cure-all” –from improving digestive health and immune function, to lowering cholesterol levels.

Probiotics are live organisms that, when taken in adequate amounts, have the ability to quickly colonize the gastrointestinal track and increase the amount of beneficial microbes, creating a balance in the gut microbiota that is considered health enhancing.

Autism Spectrum Disorder (ASD) is a neurobiological condition that impairs children’s social and communicative functioning, and often presents in the first three years of life. Many children with autism experience severe gastrointestinal problems, and the associated discomfort often worsens behavior.

Currently, there is no cure for autism, nor have any drugs been developed to treat symptoms. And no screening test can determine if a child is at risk for autism. The disorder can sometimes be detected in 18 month olds, but the majority are not diagnosed until much older.

In Hsiao’s study, researchers injected pregnant mice with a virus that enhanced anxiety, decreased ultrasonic vocalizations, increased gut barrier permeability, and shifted the gut micro flora in the offspring. When the offspring were given a human strain of Bacteroides fragilis as a probiotic, the bacterial balance was restored, and autism-like behavioural symptoms were alleviated.

A serum metabolite called 4-ethylphenylsulfate, produced by some mice gut bacteria, was found to be elevated in the offspring of the autism model. After the probiotic injection, this metabolite decreased to normal levels. Furthermore, injecting 4-ethylphenylsulfate into normal mice produced symptoms of anxiety, suggesting that this metabolite, in combination with others, affects neural circuits linked to autism.

Neurologist Natasha Campbell-McBride, formerly at Bashkir Medical University in Russia, reported that almost all mothers of autistic children have irregular gut flora. This is noteworthy since at the time of birth, newborns inherit gut flora from mothers. An analysis of the gut micro floras of healthy and autistic children revealed that gut micro flora in autistic children is of lower quantity and diversity.

Studies have shown that infants born by C-section develop dissimilar and less diverse micro flora than naturally born babies. It seems passage through the birth canal has a positive effect on the infant’s gut bacteria and may play a preventative role in autism.

The percentage of women having C-sections in the U.S. has increased from 5-10% in 1965 to 32.8% today. According to the Centers of Disease Control and Prevention (CDC), autism rates are also on the rise. Fifteen years ago, 1 in 10,000 children were diagnosed with autism. Ten years ago, 1 in 1,000. Current statistics from the CDC report the figure as 1 in 50.

Taken orally, probiotics have been deemed safe and are well tolerated for use during pregnancy. The most common adverse side effects reported are bloating and flatulence, which typically subside with continued use. It is still unclear which strain of probiotic may be most beneficial.

To date, the Food and Drug Administration (FDA) has not approved any specific probiotic health claims and the quantity of probiotics needed to be beneficial is still unclear.

Celebrities like Jenny McCarthy believe that symptoms of autism can be relieved by dietary changes. McCarthy claims a strict wheat and dairy-free diet cured her son. But anecdotal reports are of limited value, often reflecting the idiosyncratic opinions of influential individuals.

Large-scale clinical trials that study the effects of diet on those with autism are needed. In the meantime, anecdotal evidence is compelling and may eventually lead to definitive findings.

Shifting micro flora in the gut may make a potentially useful treatment for autism available. The method may even make assessing a genetic predisposition to autism possible.

Research is still in its early phases. Probiotics may improve digestive health, but the jury is still out on whether they can definitively reduce autism symptoms.